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Another Friday

January 17, 2009

Yeah, we made it to another Friday! This week seemed to fly by, despite all that we had to do. Lucy's leg is doing better, she does not appear to be in pain anymore. I think that the weight of the cast is what is bothering her the most, it is heavy weighing in at approximately 11 ounces. When you weigh almost thirteen pounds, eleven ounces is a significant weight to have on just one leg. I took her back to DuPont on Thursday morning where the consensus was that she needs to wear the cast another two weeks. In two weeks we will hopefully be able to remove the cast and evaluate her mobility and her pain level to see if she is completely healed. Baby bones are mostly cartilage; therefore, we were told that they heal fairly quickly. We did learn that Lucy has a condition called osteopenia, thinning of the bones, which is most likely related to her metabolic condition. This makes sense when you consider that her body is not metabolizing the way most of us do.
On Wednesday we went to CHOP and had an appointment with her GI doctor as well as her nutritionist. As far as appointments go, it was pretty uneventful. We discussed Lucy's newest digestive issue, pooping all night long after eating any solid foods. We are concerned that she is having issues digesting/absorbing solids as she appears to be uncomfortable several hours after she eats. We are waiting to do any GI procedures until we receive back some of her metabolic labs. We should know more in about a month. In the meantime, we are going to continue with the feeding regiment that we have established, and cut back on the solids. Lucy is gaining on her tube feeds and everyone is encouraged by her progress. Although we are encouraged with her weight gain, we have realized that Lucy is going to be receiving entral feeding a lot longer than we originally thought. Drew and I had in our minds that it was going to be 2 to 3 months of this at the longest. However, when we began the process we didn't know as much as we know today. We have had to adjust our expectations and take it one day at a time. This is so much easier said than done, especially when you are a planner like I am. As for now, there is no end in sight. All of this may sound routine as I type it, but know that it has been so difficult to get used to this "new normal". We are no longer going into appointments explaining our situation, instead we are discussing Lucy's medical condition as a fact of life. This "fact of life" brought me to tears when we were discussing her feeding regimen with her nutritionist. I never thought in my life that I would be discussing the issues that we have had to discuss recently. We love Lucy's nutritionist as she is very practical and understanding. She applauds our efforts to give Lucy as much breast milk as possible, and praises us for our dedication. I think that my emotions got the best of me when I was speaking to her because she could understand what I was feeling. As you can imagine, it is hard to find others who can relate to what we have been feeling. Everyone around us has been compassionate, but unable to truly know what it feels like to be going through what we have been dealing with. It helps us when someone can say, "I know how you are feeling".

We will continue to adjusting to our situation as need be. We are always hopeful and grateful for the opportunities that life has given us. We live knowing that we have been given the gift of raising our beautiful family no matter what the circumstance. What an awesome responsibility!
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